This blog lets you keep up with the W family. Our three boys are John who is 18, a high school grad and off to college, Noah who is 15 going on 21 and loves sports and little Ben, who is the sweetest little 8 year old, who happens to have Down syndrome(unless he accidently ate some gluten, then he turns into Mr. Hyde.)

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Tuesday, December 20, 2016

Our young disciple group recently got their first set of bells and this was their first performance. We were a little short on young disciples, so we had to get some help from some of the older members of the church. Ben was so excited to play the bells with everyone else. He did not play perfectly, but he did have a blast. We are so blessed to be part of such a loving and accepting faith community.

Wednesday, December 7, 2016

A few years ago, I sang this song as part of a duet at church. For some reason the timing on the opening lyric was hard for me, so I bought the song, so I could hear how it was really supposed to go.

Fast forward to now, and this song is still in my iTunes and is one of Ben's favorites to sing. I love catching him singing when he does not know I am listening. I had been trying to record him for some time now, but when he would catch me he would usually stop singing. This time he obviously knew I was filming him, he decided to sing along anyway.

This is actually great song for this time of year as we can all use some extra love and maybe a bridge build here or there.

Thursday, September 29, 2016

It is so great to be going to a Buddy Walk again. I didn't realize how much it meant to us to be part of an organization who supports it's nations groups in a significant way, until we had lost it. We are walking in the Omaha Buddy Walk to show support for more than 400,000 individuals with Down syndrome in the U.S. Please join us as we celebrate Ben on this special day. The event has fun activities for the whole family. It would be great to have you with us in person, but if you can not be there, please consider getting a Ben's Brigade shirt for just $10 and wearing it on that day and often through out the month of October for National Down syndrome awareness month. We have a limited number of shirts left and they look like this:

Contact us if you have questions or want more information or to order a shirt!
Sincerely, The Willey Family

Sunday, September 25, 2016

This weekend Ben was able to attend the Rough and Ready Rodeo Challenge at the Aksarben Stock Show and Rodeo. It is a fun morning for kids with special needs to spend some time at the Rodeo and even participate, with out the crowds and noise. Each participant is matched with a volunteer who takes them around the arena and introduces them to the cowboys and animals. They even get to pretend to be cowboys when they got to ride horses, rope and get up close to a real bull and even pet him. Ben had a blast. The morning was followed up by some yummy ice cream and some delicious brownies that Ben couldn't eat, but both Mom and Dad were each able to sneak one and can verify that they were delicious! Ben seems to be getting much better at understanding when we tell him that a food will make his tummy hurt. But I was not fast enough when the cowboy handed Ben some bread to feed Midnight. Ben did not eat any, but we had to go wash his hands since he touched gluten. It is crazy how gluten can pop up in the most unexpected places, but we were able to deal with it. Enjoy some photos from the day.

Bronc riding

Picking out his stick horse.

He was NOT a fan of the mustache!

Lindsey was a GREAT volunteer!

He is getting to be a pro at taking selfies!

Mom and Dad even got to be in one of the photos.

This bull was seriously BIG!

This cowboy was trying to teach Ben to rope.

Thank you to all the sponsors who helped to make this day possible. It is so awesome to see these kids getting a chance to experience the rodeo at their own pace.

Thursday, August 11, 2016

Signing Time is having a huge Digital DVD sale! All individual Signing Time Digital videos regularly priced at $9.99 will be just $5 each when you use code "5dollars". This includes videos from Baby Signing Time, Signing Time Series One or Two, Potty Time, Rachel and the TreeSchooler, Bible Fun or the new Signing Time Sentences. There is no limit on how many you can get but the sale coupon code does not apply to pre bundled sets. You can get all 4 vidoes from the Baby Signing Time set, individually, for just $20. I have never seen such a great sale.

I just wrote a post the other day on in the Baby Center DS Community page about why the digital videos are a much better investment than the physical DVD's and now with this sale they are an even better deal! This special pricing only lasts until Saturday August 13, 2016. Here is a if you are interested.

The 2016 NDSC convention was held last month in Orlando, Florida. We were once again fortunate to be able to go as a family and take advantage of the many learning opportunities offered to us. Every time I go to a convention, I learn something or meet someone who completely changes how I think about Down syndrome and the possibilities for Ben's future.

This year was no different.

For me the conference is a working vacation, I was again able to share Signing Time with the families at the convention. The most rewarding part about being an exhibitor is when families of older kids come and tell me how important Signing Time was for their child growing up, and them thanking me for coming and being a resource for young families. I was also able to share some tips and trick about learning and teaching ASL to children with Down syndrome at an hour and a half session called Jumpstarting Language and Learing using Sign Language with my friend Cyndi Johnson from Indiana. This year I also provided some entertainment at Kids Camp. It turns out, this is way different from doing a class, because at classes, parents are there to help wrangle kids in a typical 's class. In the 3-4 year old room I had them all stand up to sing along with a song and they all ran off and took my speaker and ipad that I was using to play songs. It was certainly a learning experience for me!

Our booth was next to Gabe's Glass Creations. Gabe is a self advocate from Santa Fe, New Mexico and does beautiful work with glass. Gabe took a shine to Noah and they quickly became friends. Making connections with other families is one of the best parts of the convention.

Something else that was new for me was taking along some of the buttons that Ben and I made before the convention. It was great that Ben showed an interest in making buttons, but it does take much longer at this point to have him involved in the process. All the time we invest now might just be of a benefit later if Ben decides to go into the button business. You may be hearing more about Benjamin's Buttons in the not so distant future. For now, we sold a lot of buttons and all proceeds will be donated to Down Syndrome Advocates in Action Nebraska, so it was a great fundraiser.

One of the highlights of the convention was the cast of the A&E show Born this Way. Megan and Sean's had booths just down the aisle from me and it was so fun to see the cast reunion happening live in the Exhibit hall on the first night when everyone arrived. I even got Steven and Megan to take a photo with Hopkins for our #whereishopkins campaign this summer.

Randy did not get to go to as many sessions this year since he had to help me work in the Signing Time booth while I was entertaining at Kids Camp, but he really enjoyed the sessions he attended. He chose sessions on technology and came out of both sessions he attended very energized. We are excited that this year all participants at the conference will get recordings of the different sessions, so I am excited to listen to many of the presentations I missed.

We also got to spend a couple days before and after the convention at Universal Studios. I was absolutely amazed at how well Ben did on the rides. But it was a lot of walking. Just walking up to the gate the first day made us realize that we would need to get him a stroller. He just did not have the stamina to go the long distances. I can tell already that he is going to be a roller coaster junkie, just like his Dad and big Brothers. He went on everything he was tall enough to go on, and even stood on his tip toes to get into one of the Harry Potter rides. I felt him shaking as Voldemort pointed his wand at us and shouted a curse, but as soon as we were done he would say, "Let's go again".

The special needs pass did come in very handy and made the park much easier to deal with. If a ride had a 60 minute wait, we still had to wait that amount of time, but we got to spend half of that time out of line. Once we figured out the system, we would sign up for a return time, then go use the restroom and get a drink. When we came back they would let us in the express line and the wait was much shorter. If you have a loved one with special needs, it is definitely worth it to get the disability pass.

We were a bit worried about how we would feed Ben and completely avoid gluten, but we were excited to find many gluten free options on quite a few menus. One thing that really helped was that we traded our Branson time share for a condo just 5 minutes from the convention, and it had a full kitchen. We were able to eat a safe breakfast every morning, which gave us a good start to the day. The condo really was beautiful and had a couple pools, a basketball court and a put put golf course, so there was plenty to keep us busy. Having a child with Celiac Disease certainly makes us appreciate the Time Share so much more.

It was an awesome conference/vacation and we look forward to Sacramento next summer.

Monday, March 21, 2016

Here is a little video I made to help celebrate World Down Syndrome Day 3-21. A huge thank you to my friends in the Nebraska Down syndrome community, and the on-line Down syndrome community who shared photos of your precious kiddos so that I could make this video. Feel free to share it to spread positive Down syndrome awareness.

At school we are celebrating with blue and yellow cupcakes that have festive Birthday balloons and sprinkles since Ben celebrated his 8th Birthday yesterday. He was super excited to go to the pot luck for the High School Boys Basketball team to celebrate their C2 State Runner Up Basketball season.

In addition to cupcakes, each kid will get a coupon for a free Subway cookie attached to a Random Acts of Kindness cards

Wednesday, March 16, 2016

Congratulations to the EM Knights for earning a spot in the Nebraska C2 Championship game, by beating Winnebago. The game on Friday night was one for the record books. We enjoyed watching and cheering for the team. This article says it all. WAY TO GO BOYS!

Monday, March 7, 2016

What do you do when you love Signing Time, and your church service reminds you of the Bible Fun Signing Video? Well, you stand up, pretend you are Rachel Coleman and start teaching the whole Church ASL from the back. As you will be able to hear, the pastor's sermon did not slow him down a bit. We finally had to take him out that day, but not until I captured a couple of video clips. Ben sure does keep life interesting! #Signingtimeinstructorskid

Wednesday, March 2, 2016

Today is Spread the Word to END the Word Day. In 2008, Special Olympics launched the www.r-word.org website to combat the inappropriate use of the R-word. Many people think it is OK to use the word retard or retarded if they are not referring to an individual with a disability. I admit, that before Ben came along, I said it about myself on occasion, when ever I did something stupid. Since I did not have a personal connection with anyone who had a disability, I did not realize how hurtful this word was. But the word does hurt. It hurts a lot! When you say the word in a derogatory way, it puts down people with disabilities, whether you are referring to them or not. It says you don't want to be like them. It makes them less.Most people, when confronted (or educated), apologize right away and really try not say the word again. But believe me, speaking up in person, is not an easy task. There are times I have let it go because I did not think it would be worth the fight, and times that I turned on my Mama bear and took the lesson way to far. It is much easier to sit behind my computer and type this than it is to confront someone face to face. But I am committed to being an advocate for Ben, and because of that, I have to speak up.

But there are some who when confronted, start talking about the right to free speech, about how every group wants certain words banned, and how we should not be so sensitive. Do you have a right to say that word? Sure. You have every right to be a jerk and put down other people. People with disabilities are an easy target because they are less likely to defend themselves. But individuals with disabilities have feelings, and are hurt by word as much if not more than everyone else. Families have feelings

If you are still confused. Here is handy flow chart.

There is an easy solution. Don't be a jerk. Don't say things that put others down. Make them feel like more, not less. Be someone who helps people up. Be respectful. Advocate for those with special needs when you hear someone say the word and ask them to stop. Take the pledge http://www.r-word.org/

Finally, if you still need convincing, this sheet from KC Down Syndrome Guild sums it up nicely. Click to make larger.

Monday, February 15, 2016

Our new group, Down Syndrome Advocates in Action Nebraska is hosting a mall walk for to raise awareness for the upcoming World Down Syndrome Day. #wdsd16

Ben's Brigade will be there and invites you to join us on March 19, 2016 at Gateway Mall in Lincoln NE between 9:30 and noon and walk laps in the mall. In order to qualify for the raffle you need to wear a shirt or button that promotes Down syndrome awareness. Register for the event here.

You can wear a shirt or button you already have or wear a new World Down Syndrome day long or short sleeved shirt or button. The deadline for pre-orders has passed, but a few extra short sleeve shirts of each size were ordered. Email bensbrigadene@gmail.com to see if your size shirt is still in stock. Buttons can be ordered until March 12, 2016 . Proceeds from the sale of these items go to DSAA Nebraska.

$14

$17

We also have a few Ben'x Brigade shirts available too. These short sleeve shirts are $10 each. Contact me to see if I have any left in your size.

$10

We hope you can join us, but even if you can't, we hope you can celebrate World Down Syndrome Day on March 21, 2016 where ever you are. #WDSD2016

Monday, February 8, 2016

This weekend big Brother's team played in their conference championship. It was a very close high energy game, but the Knights pulled out the win. Before the game Ben again had fun warming up with the team.

Thank you to the Dreamer and Hawks families who made the big photo cut out heads of the varsity players from the photos I took for the Booster Club fundraiser . Ben was so excited to get to hold John's head and cheer for him. (Only in the pre-game since he does not have enough self control to not smack someone with it during the game) Sorry for the blurry photos, but he was on the court and I was in the top row with just my phone.

Ben loves to cheer on his Knights. He loves it when the band plays and when the cheerleaders lead a crowd cheer during time-outs. He always encourages those around him to stand up and cheer along. The Knights are now 19-2 on the year with 2 regular season games left. Looking forward to the last few games of the season to see how the team goes.

Friday, January 29, 2016

Last week at the basketball game in Milford, Ben went up to one of the referees all by himself, shook his hand, and "told him a story". While we were not exactly sure what Ben was trying to tell him, we explained to the ref that Ben likes to pretend he is a referee at games and at home and even has his own shirt. Just before the boys game, that same ref came up and asked Ben to come down to him. He gave Ben a little bag that had an official referee patch in it. Ben was excited but was bummed it wouldn't stick to his shirt like a sticker. The ref told Randy that he would be in Murdock tonight for the varsity games so we laid out a plan for Ben to wear his shirt, with his new patch.

With the patch now on his shirt, Ben made his way down to the court to meet the referee again. Ben was a bit more shy tonight, but did pose for a photo with his new referee friend.

The kids were excited to get a visit from Nitro. Of course Ben had to hold his hand and get a hug.

Since it was the last regular season home game, it was also Parent's night so the boys were all lined up. It was nice to get a photo of the varsity boys who used to play Small Fry Basketball for Ready Mix Concrete all together.

Ben finished the night by taking about 100 selfies on my phone. Most of them look like this. I should have know from all the giggling that he was up to something.

Monday, January 25, 2016

World Down Syndrome Day, March 21, 2016 will be here before we know it. March 21st was chosen to be recognized as World Down Syndrome day because of its date 3-21, to represent the 3 copies of the 21st chromosome that individuals with Down syndrome possess. #wdsd2016

This year Ben's Brigade is kicking off our fundraising efforts a bit early to help celebrate World Down Syndrome Day. We created our own new design, because we wanted shirts in the traditional awareness colors of blue and yellow that were not dated, so they could be worn every year on March 21st. We also wanted a design that's sole purpose is to promote Down syndrome awareness and not advertise for any specific group. This design will be offered on both long and short sleeve t-shirts and 3.5 inch photo buttons available with a pin or magnet backing. Pre-ordering of this shirt design is now closed. We do have a limited number of shirt available for purchase. Email bensbrigadene@gmail.com to see if your size is still available. Proceeds from the sale of this shirt will be donated to the newly forming Down Syndrome Advocates in Action group. We would love it if you would share this post with anyone who might be interested in promoting positive Down syndrome awareness on World Down Syndrome Day.

While I understand the New Year happened over 3 weeks ago, I am just finally getting around to making a blog post about it. Unfortunately with all the other types of social media, the old blog, is among the last to get updated. But I do want to continue to share information and news about Ben with all of our readers in 2016. Thank you for sticking with us this long, and I hope to have more to share with you in the upcoming weeks and months! But until then, we hope you are enjoying basketball season as much as we are, and 2016 too.

Award

ABC Signing Kids

ABC Barefoot Kids

About Me

I live in on a farm in South East Nebraska, teach sign language to young children, am a Barefoot Book Ambassador, and help out at school, church, and fund raise for the LuMind Foundation for Down Syndrome Research. In my spare time, I love to make beautiful things with yarn, beads and cameras.